The Life and Times of a Former Academic

How to Survive a Plague

October 15, 2012

I grew up in the early days of the AIDS crisis. My school days were scattered with news stories and urban legends about the disease, not always distinct from each other. It’s no exaggeration to say that we were encouraged to believe that any stray drop of blood in a playground accident could be a death sentence in disguise. Clearly it was to some extent an overreaction, and it wasn’t quite the ever-present terror that bomb drills in the 1950s were, but it still leaves me somewhat disturbed when I hear reports that young people today have slipped into a certain sense of complacency. HIV infection isn’t taken as seriously as it once was.

In part this is because — while there is still no cure for the disease — modern protease inhibitors and combination therapies can reduce viral load to undetectable levels. We may not have won the war, but we are not being slaughtered left and right anymore. The advances that have taken us this far are miracles of medical and pharmacological research, but they may never have happened if it weren’t for a small group of dedicated activists: the “AIDS Coalition to Unleash Power”, or “ACT UP”. Journalist David France has assembled a documentary, How to Survive a Plague, looking back at ACT UP — in particular at its Treatment and Data Committee which later spun off as the Treatment Action Group — and how it fought to change the world of AIDS research.

The first hurdle to be overcome was the fact that AIDS affected primarily groups held in low social esteem. Before “AIDS”, the media referred to “Gay-Related Immune Deficiency”. The CDC itself referred to “4H”, for the significantly affected populations: Haitians, homosexuals, hemophiliacs, and heroin users. Despite being recognized in 1981 in the United States, Ronald Reagan would not so much as mention AIDS in public until near the end of his second term in office.

Even as it became more politically feasible to research the disease’s etiology and treatment, there seemed to be little coherence among the research community. Different groups studied whatever they wanted, with no concerted effort to cover all ground and to avoid unnecessary duplication of efforts. Worse, the Food and Drug Administration didn’t seem to consider HIV/AIDS treatments worth accelerated approval protocols.

The film chronicles the realization that in order to speak truths effectively to power, the activists would need to become experts themselves. The T&D committee arose as a working group within ACT UP dedicated to learning the science — both its current state and its methods. We also watch the actions that the larger group took to bring these pressures to bear on the relevant government agencies.

France — a print journalist by trade — has done a marvelous job in his research. AIDS activism coincided with the rise of the prosumer video camera market; rallies and actions were extensively documented at the time, and in most shots we can see a handful of other cameras among the crowd. France went from each piece of footage, identified these other videographers, and tracked them down. Or at least their families; the subject being what it is, many of them have died. From there he found even more footage, leading to more footage, until by the time they started editing the filmmakers had hundreds of hours to work with.

The drawback of this almost total reliance on archival footage is that there is little in the way of retrospective analysis. We hear a story about the group’s research proposal, for instance, but never really hear any details about what it was and how it differed from the status quo.

And without retrospective analysis it’s hard to put together a list of “lessons learned”. In particular, to what extent and by what methods did ACT UP manage the most difficult and most crucial transition for any activist group. It’s one thing to take action because you will die; it’s not too far from that to take action because someone you know and care about will die. But how to you convince someone to take action because someone they don’t even know will die? How does someone come to oppose a war that will never kill anyone they love?